SOMEONE has been sick for a long time.
One day we meet the person and our jaw drops. His or her appearance has changed so drastically that it is as though we are looking at a different person.
We agonise over what to say. How Are You or Sorry To See You Like This? Is this appropriate? We certainly like to offer some comfort but how do we go about it?
Mohd Fazlie Rosli has been living with an ailing kidney condition for some years.
The 31-year-old said when people met him, they always asked “Are you okay now?”
He felt like replying “Me, okay? I’m not okay at all and I will never be okay again.”
Of course, Mohd Fazlie — Gomeng to those who know him — never gave such an answer. He knows people are just trying to be nice and show their concern. So, usually, he would just say he is okay.
He said it may come as a surprise that in most cases, people with a chronic illness would rather that other people be honest and show them some empathy.
He pointed out that questions like “Are you okay now? How are you?” are certainly not helpful. It’s worse when people say “You look great. You’re so brave. I’m sure things will get better.”
He said these remarks sound rather insensitive and could even be mistaken for a bad joke, especially when it’s obvious the sick do not look great — they may have lost a lot of weight or are having sores on their skin and losing their hair.
According to Gomeng, the following line — “My friend has the same illness you have but he is fine now” — isn’t much help either. Nor is asking a patient what you can do to help or to let you know if he or she needs anything — even though this may seem a very nice gesture.
He said asking an open-ended question is like putting the burden on the patient to decide what help is not too much to ask from the person offering to help.
Gomeng came up with a few suggestions on the more helpful things to say to a sick person.
If you are really sincere in wanting to help a sick friend or a relative — instead of asking an open-ended question — it would be better to be specific about what you can or are prepared to do.
For example, you can ask if there is something in or around the house you can help to do — like changing a blown bulb, trimming the grass, taking the car to the workshop or the children to or from school or picking up something from the grocery.
Maybe you also can say something like the coming Thursday is a free day for you and ask if the patient would like you to take him or her somewhere. And if you are good in cooking and know the patient loves a certain dish, you can offer to arrange a time to cook it and bring the dish over for dinner with the patient.
If both families have little children, it may be a good idea to say “My kids want to go to children playground at the mall tomorrow. Can I also go to fetch your kids so that they have playmates?”
Gomeng said nowadays, many people go on social media like Facebook and WhatsApp.
“If you write to a patient to express your feelings and concern, do let him or her know you do not expect a reply because you understand they may be tired. This is because sometimes the sick persons may be so overwhelmed with messages from well-wishers that they may not be able to reply to everyone.
“And if you visit the sick, regardless of whether in hospital or at home, do not stay too long because many may be too tired or are in pain and your presence can become a burden instead of a help. As such, you may come across moments when you fall uncomfortably silent, not knowing what to chat about anymore.”
Gomeng said depending on the relationship between the visitor and the patient, one of the most magical things to do is to let the patient hear the simple and intimate “I love you” statement.
The bottomline is chronically ill patients know you care and it is just that the delivery of the message can sometimes be off, he noted.
Gomeng said his kidney problem has progressed to an end-stage renal failure, virtually immobilising him — no more vigorous activities. He used to play rugby, his favourite sport, for Miri and the State but that’s out of the question now.
His dialysis treatment has caused his bones to become brittle and he is even advised not to do any running. He does only light exercise like brisk walking — and even that can tire him easily.
Gomeng confessed he loved food but knew his family had a history of diabetes and high blood pressure, so he tried to avoid what he thought were bad for health.
However, he said generally he did not pay much attention to his diet, eating a lot of seafood despite the allergic reactions, adding that when he found his body did not seem to react to seafood, he thought the problem was over, so, he went ahead to eat seafood almost daily.
He also loved junk food and fast food and took them almost everyday. He used to eat two full plates of rice each meal. Although he took plenty of water, he frequently also drank sweet beverages.
He ate a lot of sweet stuff as well — like chocolates and candies. In short, he kept munching as long as he was awake.
At that time, he was ignorant, thinking as long as he did not feel sick, bingeing was okay. Very often, he did not get enough rest and sleep, all the while not having the slightest inkling that one day his life would change forever.
It was around mid-2014 that he began to feel something not quite right with his health. One clear change was that he could not sleep. He went for a check-up and was told his red blood count was dangerously low.
He was diagnosed as anaemic and hospitalised immediately but was shocked and confused that his case was treated as an emergency.
“In fact, on the day I went to the clinic, I still ate two kg of crabs and some black pepper beef,” he admitted.
When told he had acute kidney failure, he still wasn’t sure what it was because he knew nothing about the illness. It took him quite some time to learn about his condition as he got little explanation from the hospital.
The disease has now progressed to end-stage renal failure. The cause was stated as unknown, but after some analysing, he believed it was due to his own fault — taking his health for granted and not keeping a healthy lifestyle, especially his eating habits.
Gomeng said after he realised the seriousness of his condition, his world came crumbling down and he started feeling his life had become meaningless.
Now he always feels thirsty but is allowed to drink only 750ml of fluid a day. He cannot eat a lot anymore and has to avoid dairy products. He can only eat a moderate amount of carbohydrate and protein, and a low calcium and low phosphate diet. He used to weigh 89kg but only 58kg now — 31kg lighter.
“I miss all the food and the drinks. Being always thirsty, I feel like drinking buckets of water but I may drink only three glasses of water a day now. I miss eating fruits, especially durian and rambutan. Most fruits I cannot eat now, not even banana. Recently, I did not follow my strict diet and ate nearly 30 rambutans and it gave me a bad chest pain the next day.”
Gomeng said rambutans are high in potassium which is actually good for the heart but if there is too much of it in the blood, it can stop the heart.
The kidneys do the job of removing and maintaining the right amount of potassium in the body. Fortunately, Gomeng was on a dialysis when he had the chest pain — so it was under control. He admitted he did not reveal over-eating rambutans to the nurse in charge.
Gomeng said sometimes he was so overcome by frustration that he could not enjoy eating or enjoy life anymore, adding that this sometimes drove him to want to eat even more.
To know more about his condition, Gomeng started reading up on kidneys and dialysis. He usually did this in the time he was having his haemodialysis treatment — four hours per session and thrice weekly.
He also tried to seek support and solace from support groups, including those from outside Malaysia.
Gomeng said because of his frequent dialysis treatment, he could not go travelling like he used to, adding that if he did, he would have to book slots at the dialysis centre of his destination.
For him, haemodialysis is necessary because the process filters out water and harmful wastes. Blood is pumped through a plastic tubing to a filtering device called ‘artificial kidney’.
Before Gomeng began treatment, he had a minor surgical procedure called arteriovenous (AV) fistula for dialysis access.
Such fistula is caused when an artery and vein are directly connected. It is an abnormality that under other circumstances might require surgical correction. For someone with failing kidneys, surgically creating such a passageway can make the dialysis process easier.
Gomeng said: “The first two years of my kidney problem, life was most depressing. I had to go for counseling because I felt so helpless and useless. I could no longer get jobs. Who would want to employ someone who had to stay away from work for four hours three times a week?
“Furthermore, I can only do light jobs. I felt ashamed — as if I was rejected by society — to the extent of withdrawing into a shell and not wanting to interact with others. Fortunately, my family and some friends gave me a lot of moral support or I would have given up.”
Another thing he found rather disconcerting was being approached by people, claiming to know of remedies for kidney failure. Some tried introducing him to all kinds of supplement products, even saying they could heal damaged kidneys.
He spent a lot of money on these products, believing they could reverse his condition.
Gomeng said the truth he discovered through his extensive reading and research, consultation with medical experts as well as support groups, is that there is no cure for end-stage kidney failure.
“Once a kidney is gone, it’s for good. Nothing can be done to repair a damaged kidney. The only chance left is transplant, which is something next to impossible for me.”
Gomeng is presently secretary of the Persatuan Kebajikan Pesakit Buah Pinggang Islam, Miri, set up last year. He is now trying to create awareness of Chronic Kidney Disease (CKD) through the association as he does not want others to fumble about like him when he had very little knowledge about the disease.
Besides, he wants to rid people’s minds of all the nonsense, the myths, and the misconceptions about kidney problems and their purported cures.
The leading causes
According to the National Kidney Foundation Kidney (NKF) Malaysia, diabetes and high blood pressure are the two known leading causes of End Stage Kidney (Renal) Disease (ESRD) or Kidney Failure, accounting for over 60 per cent of new dialysis patients in Malaysia.
Kidney disease can also develop from infection, inflammation of blood vessels in the kidneys, kidney stones and cysts. Other possible causes include prolonged use of pain relievers, alcohol or other drugs (including prescription medications).
There are three types of Kidney Failure:
This is the sudden loss of kidney functions over a few hours or days. It can be due to one of the various types of kidney diseases or infections or low blood pressure after an accident.
Loss of kidney functions in Acute Kidney Failure is usually temporary but can be life-threatening. In most cases, this type of kidney failure is reversible but may occasionally not respond to treatment and may progress to Chronic Kidney Failure or End Stage Kidney Failure.
Acute Kidney Failure is more common in men than women. When it occurs, investigations are undertaken to determine the cause. This may include a kidney biopsy.
Sometimes there are specific, treatable causes, but often, it is simply a case of waiting patiently for the kidneys to heal themselves and recover their functions.
Many people with Acute Kidney Failure require dialysis while they are waiting for their kidneys to recover. However, sometimes Acute Kidney Failure can be managed conservatively by simply watching the blood pressure and the blood chemistry and waiting for kidney functions to return.
When the loss of kidney functions is gradual and progressive, it is referred to as Chronic Kidney Failure. Eventually, the kidneys are unable to remove wastes or maintain the body’s salt and fluid balance, resulting in the need for dialysis treatment. The symptoms may not be noticed immediately.
A build-up of creatinine (a waste product normally removed by the kidneys) in the blood will indicate kidney functions and the level of kidney impairment. The risk of Chronic Kidney Failure increases with age.
This phrase means the kidneys have failed completely, and can no longer support life. Some people with End Stage Kidney Failure stop passing urine completely — others will still pass some weak, watery urine.